Wednesday, May 18, 2011


A few weeks ago, we were able to get together with our friends, Angelina, Jesse & Anika.  Even though they live nearby, we are both so busy that we're unable to get together very often, but we always have SO much fun together!  Anika has microcephaly like Claire & Lola, and she will turn 2 years old in July.  I was honored and SO excited to meet their dear family about a year ago because it's not often I find other families who have children similar to our girls (let alone 20 minutes away!).  Anika ROCKS. MY.  WORLD.  Honestly... she is AMAAAAAAZING, THE most adorable little girl (no offense, C & L!  KIDDING!!!!!), and simply BRILLIANT.  I watch her in awe, delight in her accomplishments, and celebrate with Angelina & Jesse in all she is able to do...which is an awful lot!!! 

Anika can stand SO WELL!  She has really gotten the hang of it since I saw her last!

Grasping a toy!  And then...

...transferring that toy to the other hand!  This child is GIFTED!  OMG!

Gotta touch my girl!   Heart.  Warm.  xo

Holding Claire's hand... <3

My girl is HAPPY.

Anika is a freakin' rock star in her gait trainer!  She was all over our living & dining rooms, even figuring out how to turn around at one point!  I DO hope Jesse got those protective pads on the front of that bad boy though... Anika tends to use it like a battering ram.  LOL
Lovies for Mrs. Pocket!!!   (Sorry about the camera angle, bad!  Though the guys will probably thank me!!!  LOL)

Polly Ann feels like a giant here.  :)

Anika was all up in Pocket's personal space!

(ignore Polly Ann's random glowing left Terminator eye... it is freakin' me the hell OUT!)  And sorry for the Arnold reference.  He's now on my shit list.

Micro Posse

MELTDOWN HAS OCCURRED!!!!  Anika's "fits" were hysterical!  She'd just go limp, fall backwards & then cry... not as funny to Angelina & Jesse, but Scott & I were laughing our asses off!  It is just SO COOL that she can have a fit and show her true emotions and frustration!!!

SO.  FREAKIN'.  LOST.  in her eyes... OMFG.  Cal loves Anika!!!  He just kept telling me, "Mom, she is SO CUTE!!!!!!"

Lola was a perfect angel for Jesse... and I TOTALLY could've used  him yesterday morning around 6:37 am-ish as Pocket had not gone to sleep yet, dammit.  Hence the fragmented thoughts & disjointed writing  ~  sleep deprivation is a BITCH!  I blame Polly Ann.  She was in dwarf time out.  Like for the WHOLE DAY yesterday!!!!!  (kidding... sort of.  :)

I LOVE HER!   xo
The first time I met Anika a year ago, I remember telling Scott, "WOW... she can do SO MUCH.  I wish our girls were able to do what she can do..."  And for a split second, I'm almost ashamed to admit, I WAS JEALOUS.  And, for the love of God, what kind of parent is JEALOUS of another special needs child's abilities?!?!?  (PUH-LEEEEASE tell me that is normal!)  WHY HAVE I at times wished my girls had Down Syndrome or "just CP" instead?!?!  Because I am a real hot mess mostly.  But also because I'm a mom who wants to optimize my kids' lives in whatever way I can...even though being able to DO MORE doesn't necessarily equal more happiness, though in my warped mind in the beginning, IT DID (run-on sentence much!?  DANG!).  In my defense (HA!), I mostly felt that way when Claire was quite young, as I was just a rookie in this new life.  I cannot tell you the number of playgroups I attended during her first year where I was repeatedly asked, "HOW OLD IS SHE AGAIN??? Ohhhhh, she's ONE... OK..." followed by then getting ignored by said bitchy mother(s).  There are no words for how much that hurt me then when I needed the support the most.  Just tell me she's beautiful & perfect & you cannot wait to follow her (hopefully) long, amazing life & LET'S MOVE THE F ON!!!!!!!!!!  :)

In addition, every "loss" (having to repeatedly hear, "She won't walk, she won't talk, she probably won't live to be 1, she is blind," yadda yadda yadda...) was just one more crushing blow, and I SO wanted to cling to every last "normal" thing I could, mostly for ME, selfishly.  Though sometimes even now when I'm tired or hormonal (f'in' PMS!) or pissy or super stressed or deprived (LOL), those jealous feelings occasionally return... and usually I know that is when I need to look inward at myself, not at what the girls are somehow "lacking."  In those quiet, peaceful, meditative moments, I focus on how PERFECT Claire & Lola STILL ARE, limited or not.  I don't need them to walk to bring me joy... ditto talk, crawl, sit unassisted, smile, see, etc.

All that being said, YES, I DO occasionally wish sometimes that Claire & Lola were able to do some of those things.  It would certainly be mind-blowing to see them walk in a walker or use their hands deliberately or smile in response to things I do or say... and I think that makes me appreciate kids who CAN do those things that much more.  Hence, Anika having my heart COMPLETELY!  But also, I know that my girls don't have to DO ANYTHING or ACCOMPLISH SOMETHING BIG (developmentally) for them to impact the world around them with their sweet spirits.  I already love them with every fiber of my being  ~  that happened as soon as I found out I was pregnant with them, and it grew a million-fold once I realized their genes were even more unique than most.

Everyone has their "thing," we have decided.  With each diagnosis comes struggles, difficulties, things to watch for, concerns, fears, and disappointments.  With further cognition comes more painful understanding vs. my girls who won't ever be able to respond appropriately to someone making fun of them or hurting them, not to mention possibly not even being capable of comprehending that type of pain.  Walking and mobility (while f'ing UNBELIEVABLE to me) brings increased independence with associated risks (tumbling down stairs, running into traffic, parents basically being on "suicide watch" all day!) vs. my girls who basically stay put where I lay them (aside from Lola's bed base jumping escapades... Grrrrrrrr.....!).  I could go on and on about the advantages and disadvantages of each scenario, but suffice it to say, we are all given EXACTLY the child(ren) we were meant to experience in this life.  I personally do not believe it was an accident or a mistake that I was blessed with TWO profoundly affected daughters and one amazingly gifted son.  Perfection... all three of them. 

And to those well-meaning-but-clueless people who STILL continue to say to us frequently, "THANK GOD you have Cal..."  Ummm, you guys can SUCK IT.  Thank God we have Claire and Lola, too.  They COMPLETED our family in a way I cannot explain.   I have always loved the Garrison Keillor quote in my blog's side margin which states: 

“Some luck lies in not getting what you thought you wanted but getting what you have, which once you have got it you may be smart enough to see is what you would have wanted had you known.” 

I could not agree more.



Teri O'Grady said...

I love your girls and your blog. I'm touched by your acceptance of them as they are and the gift their lives bring to your family and how they touch other peoples hearts. And I can relate to your honesty when you express your feelings! I have a 16 year old daughter (Colleen) with Down Syndrome and mild microcephaly-if there is such a thing as mild. She functions at a preschool level and has a lot of cognitive challenges. I get jealous of other kids with DS for talking clearly, using cell phones and Ipods,staying home independently etc. etc. I hate to whine but some days I just wish she was more capable. Most of the time I think she is a great kid. Then there are days like this weekend when her twin brother went to prom and she didn't (no special needs kids did but that is a whole different angry mom story!).Your story really touched me today. Don't feel guilty about jealousy. It's just nice to hear someone else feels that way too. You're a great mom for your kids!

ANewKindOfPerfect said...

My first comment is holy boob shot Angelina! Shake those mama's!! ;)

Okay, so isn't Anika the cutest thing ever! I love her. And her parents .. so sweet. I am glad you guys got together, although quite green with envy.

The part about being jealous of other special needs mamas ... I can so relate. We have many friends who have children with down snydrome who have stolen my heart. It kills me sometimes still to watch them though, because at 2 and 3 years old they are running around and playing. Even if they are delayed, they are past Emily. It is crazy to think "Wow, I wish my girl just had CP and could things other disabled kids can do". But I get it.

And then she smiles at me, and my heart melts, and I realize she is PERFECT in every way. :) Like your beautiful girls .. even if they do give stink eye sometimes!

Aleks said...

Your blog moves me so much. You are amazing with your kids and they are all gorgeous!

You, as a Mom, are an inspiration to me and make me want to be a better Mom to my boys, to focus less on their issues and more on who they are.

We're living with special needs like sensory processing issues, ADHD, autism, anxiety disorders, scoliosis (a new diagnosis for all 3)and so on so, minor compared to your girls (please let that have not come out the wrong way!)and your support and enthusiasm of your children puts mine to shame.

I spent a long time writing this (lol) so if anything I wrote here comes out sounding wrong I apologize.

Shawna Cromwell said...

You and Scott are amazing parents Gwen! Because of your strength, I learned so much very early in the game.

Gosh I am jealous that your gurlies could have a play date with Anika and you could enjoy visiting with her folks.

This life is a blessing and our existance is a combination of all that is good and bad. It makes Don't second guess and be affirmed as you stated, your children are no accident, they were placed divinely in your responsibility because you could love them immensely beyond what outhers could fathom.

Rough days, sure. People's pitiful sad faces when they find out the ages of our children and then ask "what's wrong with her"...I hate that moment of silence and I don't hate much ever. Like I have to convince ppl that Kyleigh is healthy and not sick. Being told by a nurse in the field that she couldn't work in the NICU because she can only work with healthy babies. Well, I think she couldn't think of anything else to say and was caught off guard.

We define our own path or definition and this will enable others to understand and have empathy. you my sister! Took a tangent, didn't I?!?! said...

Oh honey. Truly we are given the gift of the children that are especially for us. I'm not sure if you know this but both my lovies are adopted. I couldn't have had more perfect children "for me" if they had been born from my own body. They are both exactly what I needed and what challenged and grew me to where I am today. I am blessed and thrilled to be a part of their journey and to have them be a part of mine.
You are a great Mama and wife... Such a perfectly special person and I just believe that God knew exactly what He was doing when He chose you to be Claire and Lola's mother. Those who say how blessed you are to have Cal see only one-dimensionally. They don't have any concept of the fact that you will have and I'm sure, do have, just as many struggles and turmoils with Cal as you do with the girls. Their "special needs" are just different. "SPECIAL" to them individually.
I love your blog, I love your heart and I love being able to glimpse a piece of you. You inspire me and spur me on to be my best self. Thank you for that! said...

p.s. I have to admit that I was also jealous of the boobage.

Kathryne Foster said...

I am also moved my Anika's abilities! WTG chick!! And I know that jealousy feeling all too well Gwen.

As always you just have a way with words that makes me realize what a gift everything is!! everything!!

Angelina Anika said...

I wanted to start by saying I love reading your blogs girl! and thank you for letting us be in one!
Anika loves your girls and we are so very thankful to have y'all in our lives! We were lost and alone before we met you and your family,love you guys! Your family's strength has inspired us. We are so lucky to know y'all!
To hear you say you were jealous is hard for me. I once got asked if I thought I was rubbing all my bragging about Anika in other moms faces. I honestly didn't know how to respond. But I know you are one of Anika's biggest cheerleaders.
As for the picture... All 3 girls too cute! *Transferring is Anika's newest trick still love to see it *Yep Jesse got the padding on and she still loves to run it into things lol *Wow thanks for the boob shot :) ever since breastfeeding those bad boys are out of control lol *Love the pics of the 3 of us! <3 *Yes the infamous fits of Anika lol *LOVE the Cal and Anika pic! Thanks Cal *Jesse adored Lola!
We always say it but we NEED to get together more! Love you guys!

Jenn said...

We all have our moments - our bouts of jealousy, fear, rage and disgust...usually always because of someone else's stupidity, but we are also allowed the moments when we get lost in seeing what our children CAN'T do instead of all that they can do.
Then we get three hours of sleep, wake up and realize just how great life really is....

Marcela said...

Gwen I'm so with you! I can't tell you how many times I've said, if only it were *just* down syndrome! And yes, when I look at other kids with HPE that are doing amazing things, I do get that tightness in my stomach. And it's worse because then I feel, it's not fair, we've done so much, why hasn't N made more progress? But in the end I always feel grateful for the boy I do have and for all that he CAN do, heck I am grateful for every breath he takes and he doesn't have to do anything, and then it's all better. I've also learned that 'rejoicing' in what other kids can do makes me feel a whole lot better! so after the pang i marvel in their skills and all of a sudden i am happy again ;-) i wish we could have a play date too!

Shannon said...

Great post! so funny because you started all casual and then BANG! Our of no where! But I totally agree, everyone has their thing, someone asked me if I thought other people got jealous of Dylan or if she was inspiring, I had no idea how to respond, I just said I hoped she was inspiring because I have other kids that insure me. I loved your perspective and you are so right, everyone has their thing I think about how Dylan won't ever know an insult (in your face you big bullies!) all the time. Everyone has their own amazing silver lining!

And, she is ADORABLE!

THANKS for this post. :)

MommaRussell said...

OMG how stinkin CUTE is little Anika!!! What a dolly!
Girl I love your blog, Somehow your magange to always put into words the millions of thoughts that seem to run in my head a random times! Freakin love it! Thanks for sharing your jelousy issues,Sometimes I have to admit I'm jealous my mirco babes are more gifted then others. While they have amazing use of large motor and some fine motor skills. (My jelousy seems to work in reverse i guess) Sometimes I wish they didn't, I'm always fearfull of them running in the road, opening doors and getting outside on there own, Usually totally unaware of the dangers around them.
You are an awesome momma to those beautiful girlies! Your blog inspries me to be a better mommy even in the times I'm frazzled and stressed, or don't understand the why me's in our life.

Lisa said...

Perfection...all five of you!

Shannon said...

WOW--What a "real" post. You are so right that your girls are gifts just as they are, but I think all parents can appreciate your honesty about being jealous at times. We adopted our beautiful daughter and then I got pregnant with our son shortly after. They are both the most AMAZING blessings. People make comments to us about how our son (who is, BTW "Cal" for Callum) is such a miracle, but they are BOTH miracles in their own right. They are both my dream come true. It's not the same thing of course, but I can relate to people making stupid and totally insensitive comments. Reading your and the Tellinghuisen family's blog has helped me be more aware of families with children how have special needs. I hope that I can be a better friend to someone because of you being so open and honest. Our church has a ministry to special need's children and families, and these kids are called our "special blessings." They are the most amazing kiddos! Blessings to your precious family!

Sandy said...

Ok..... Reading your blog just reduced me to a blubbery mess of tears. I can so, SO relate to your feelings of ocassional jealously and later self-remorse for it about the abilities of others kids. When my micro/liss boy was born, there were 3 other healthy babies born on both sides of the family and by a very good friend. Tough!!!! We were surrounded by "normal" kids and it hurt!! And like you said each continuing piece of bad news just compounded it! How I wish I'd had these connections when my bubba was born almost 12 years ago. I felt so alone and over whelmed. Your blog is truly a blessing to all of us who so "get it!"

Nicole Davis said...

I'm so amazed at what an awesome mom you are to your two girls and sweet boy. As a stay-at-home-mom of two "average" boys I realize how much work being a full-time mom is. But you rise above and beyond an "average" mom. I would like to believe that if I had beautiful children like Claire or Lola, I would rise to super-mom status to meet their needs like you have, but I truly can't fathom or even comprehend what amount of inner strength that would take. And yet you manage to give all your precious babies the mothering they need and provide a beautifully enriched and loving life - involved in every sort of family activity that nurtures each of them. Thank you for sharing your most intimate family moments - I may never have your courage but you have my deepest respect and affection.

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